Autistic Girls & Women
Adaptations to Autism
This is chapter 1 in Autism and Girls by Tony Attwood and Michelle Garnett, published by Future Horizons.
Until recently, the gender ratio for autism was estimated as four boys for each girl. However, clinicians are increasingly receiving referrals for diagnostic assessments of girls and women, and a recent research study has established a ratio of two to one (Rutherford, McKenzie and Johnston 2016). Why have we not previously diagnosed the true prevalence of autism in girls and women? The answer is that girls and women have so often successfully camouflaged their autism.
One of the central characteristics of autism is a deficit in social communication and social interaction (American Psychiatric Association 2013). The social and interpersonal aspects of life are a challenge, so how does the person who has autism adapt to these challenges? Clinical experience suggests there are three potential adaptations: the introvert, the “intensive” extrovert, and the “camouflaging” extrovert.
The Introvert
The more easily recognized adaptation is that of the person who could be described as an introvert. The child (and subsequent adult) actively minimizes or avoids social engagement, recognizing that social interaction is indecipherably complex, overwhelming, and stressful. This conspicuous adaptation, therefore, is to choose (where possible) to be alone to accomplish things while not necessarily feeling lonely.
But we are increasingly recognizing those people with autism who are extroverts and highly motivated to socialize. For these people, there are two potential adaptations that facilitate social engagement.
The “Intrusive” Extrovert
The first of these two adaptations is to actively seek social experiences, even though the person may not be able to read all the subtle social signals that regulate and moderate the intensity of social engagement. Due to impaired theory of mind, those who have autism often have difficulties reading the nonverbal communication used in a social interaction. Their social behavior is then perceived as intrusive, intense, and irritating. A metaphor to describe this adaptation to autism is that of a driver who does not see the traffic signals (nonverbal communication) or abide by the traffic code (social conventions). They are unable to accurately read social situations and therefore act inappropriately. While there is considerable motivation for social interaction and making friends, these experiences may nevertheless be ended prematurely by the social partner. The consequence is that the person feels bitterly disappointed that conversations, friendships, and relationships are short-lived, and social popularity remains elusive. Another issue is that once friendship is achieved, the person can become possessive, idealizing their new friend with an intensity that is overwhelming. When the friendship or relationship ends, there can be intense despair and feelings of abandonment, betrayal, and of being misunderstood.
The “Camouflaging” Extrovert
The second adaptation for the person with autism who is an extrovert is to recognize their difficulties in reading nonverbal communication and in making and keeping friends. With this insight, they acquire successful social and interpersonal abilities by keenly observing peers and people in general, analyzing their social behavior, and interpreting and abiding by social rules and conventions, thus effectively camouflaging their social difficulties. The person creates a social “mask.”
This chapter focuses on this third adaptation to autism—camouflaging—which was first recognized as an adaptation to autism by girls and women, but which we now recognize as also occurring with males (Lai et al. 2017). To understand the camouflaging process, it is important to first consider how the social development and abilities of girls and women who have autism may differ from boys and men who have autism.
The Developmental Profile of Girls and Women With Autism
Early Childhood
Clinical experience and parental reports indicate that girls who have autism have greater social motivation and engagement than their male peers. However, a characteristic of the girl with autism when playing with her peers is a tendency to be overly dominant and controlling or to be attracted to other girls with strong personalities who tell her what to do (Ormond et al. 2018). Parents often report that she is indiscriminate and excessive when expressing affection or extremely reticent or uncomfortable expressing affection, even with family members. Parents also describe extreme emotional meltdowns in particular situations, such as having to cope with a change in expectations or in response to specific sensory experiences (e.g., being in a crowded shopping mall). The despair and agitation are intense, and parents are often unable to distract or console the child.
Girls who have autism may decipher and analyze social experiences by replaying social events with doll play. Each doll represents a person and the reenactment helps clarify the social signals, conventions, and script. Girls who have autism can have a remarkable ability to engage in solitary imaginative play, creating imaginary worlds, and having imaginary friends, which provides an opportunity to create and rehearse social scripts. The child’s teacher and parents may notice that she rarely engages with female peers, who she perceives as behaving in an incomprehensible way and following inexplicable social rules. When she is engaged in imaginary social play, there is no criticism or rejection.
In contrast, some girls avidly observe other girls playing and socializing and may copy or “clone” themselves after other girls, “borrowing” their gestures and phrases to achieve the social abilities needed when playing with peers (Ormond et al. 2018). The child may imitate gestures, facial expressions, and phrases, which are reenacted and rehearsed when she is alone. Parents may notice that she is more animated when imitating and engaging with her peers than when engaged with family members.
Early School Years
An adaptation in the early school years for girls who have autism can be a preference for playing with boys, as they are perceived as engaging in simpler and more logical play. She may become known as a tomboy, preferring to look androgynous and enjoying sports and physical, rather than conversational, interactions. She may prefer single, close friendships, a characteristic that may continue throughout her life.
Alternatively, she may try to be included with her female peers by developing an interest in expressing femininity in clothing and color coordination and becoming knowledgeable about the topics of conversation of her peers, such as popular films, television programs, and computer games.
If she is effectively rejected by her peers, she may develop an interest in reading fiction, sometimes at a level in advance of her chronological age. Fiction can often provide insight into people’s thoughts and feelings, which can give the child a better understanding of her peers. If she happens to enjoy the Harry Potter books, she may appreciate the thoughts and feelings of Hermione, who herself expresses many characteristics associated with girls who have autism; for example, all her friends at Hogwarts are male.
The girl may also show a greater interest in socializing with pets and animals rather than with peers. Animals accept you for who you are, do not tease and ridicule you, want to play with you, and are always genuinely pleased to see you.
She may not want her social confusion to be recognized by her teacher and peers, so she becomes very well behaved in class in order to be left alone. She also knows that if she is quiet, no one will notice her. She effectively suppresses her autism. However, when she returns home, she becomes a very different character—a Dr. Jekyll and Mr. Hyde transformation. She is no longer timid and shy, and she may be emotionally volatile, demanding, and angry. Parents frequently experience behavior that would never be expressed at school.
High School Years
The nature of female friendships changes throughout the school years, and the teenage girl who has autism may not understand the innate social “rules” of typical adolescent girls, such that when with female peers, she frequently makes social faux pas (Baldwin and Costley 2016). She may have difficulty understanding and responding to the subtle, nonverbal communication of typical teenage girls, such as eye rolling, shared glances, and giggling (Dean, Harwood and Kasari 2017).
Adolescent girls who have autism are extremely loyal, kind, and helpful friends. They rarely engage in gossip and are not “bitchy” or mean. These engaging qualities may be recognized by a typical girl, and a friendship may develop between them. The typical teenager can then provide social guidance and prompting and a sense of security, especially from the teasing, bullying, rejection, and humiliation by female peers.
If she has a small group of friends, she may be overly sensitive to conflict between her friends. She may take on the role of peacemaker and be eager to restore emotional harmony. If she belongs to a larger group of friends, she may have difficulty coping with too many opinions, egos, and factions within the group (Vine, Foggo, and Webster 2017).
She may not identify with or enjoy the interests of teenage female peers, such as fashion, makeup, boys, and dating. She may be less able to identify with her peers’ construct of femininity. She may then question her own gender identity (Kanfiszer, Davies, and Collins 2017). By not enjoying the same interests, she is more likely to be ostracised, feel lonely, and be aware of and sensitive to derogatory comments such as “you are weird,” which will affect her developing sense of self.
In contrast, she could become an expert in teenage fashion and know all there is to know about the popular boys. She may be aware of the social scripts of her peers and know what to say. However, if in her early school years she observed and imitated her peers but was still rejected, she may decide to have a paradigm shift in her persona, despising femininity and social and gender conventions. She may identify with marginal groups, deliberately defy social conventions, and engage in risky behavior.
The Adult Years
The teenage girl may have effectively camouflaged her autism. She may have “flown under the radar” and not have been considered for a diagnostic assessment for autism. Every day she has acted out the role of a typical girl, so much so that she should be awarded an Oscar for her performance. She has a superficial sociability that is effective, but exhausting. She also has a lack of social identity, other than being the person that others expect her to be.
This social acceptance and success will have been achieved at some psychological cost. There can be performance anxiety in social situations, as though she has been continually “on stage.” The resulting stress may evolve into an anxiety or eating disorder.
She may be popular and socially successful, but this is achieved intellectually rather than intuitively. Like Cinderella at the ball, she can maintain the pretense for a while, but then becomes totally drained of mental energy and must return home to recover in solitude. The unrelenting mental exhaustion of processing social information and social expectations can lead to depression and even self-harm.
The consequences can be a lack of knowledge of her inner and true self, with some adult women saying, “I don’t know who I am.” This may lead to a lack of self-identity, low self-esteem, and prolonged self-analysis. She recognizes that her friendships and relationships are based on deceit, where she has presented a “false” identity. This increases her feelings of deep inner loneliness. She yearns to find, and be able to be, her authentic self, but is aware that when her true self is revealed, she may be rejected and despised. In this way, camouflaging aspects of autism, while successful in some respects, can contribute to the development of clinical depression.
The Stages in Camouflaging Autism
Research and clinical experience suggest a three-stage model of the camouflaging process (Hull et al. 2017). In the first stage, there is motivation to be successful socially and to develop friendships. The second stage is to acquire the ability to camouflage social confusion, social immaturity, and a delay in social reasoning. This is achieved by masking and compensation strategies. The third stage is short- and long-term consequences, including delaying a diagnostic assessment, access to appropriate support and understanding, and subsequent mood and psychological disorders.
We now have a questionnaire to explore whether a person engages in camouflaging in social situations (Hull et al. 2019). The Camouflaging Autistic Traits Questionnaire (CAT-Q) was developed from discussing aspects of camouflaging with adults who have autism describing their experiences. Exploratory factor analysis suggests three factors with the questionnaire, namely compensation, masking, and assimilation.
Compensation
This strategy is to learn and imitate body language, facial expressions, and conversational scripts. This knowledge can be achieved by observation of peers, but also by reading fiction or watching soap operas and films to acquire scripts and different personas. The girl may also be interested in studying psychology and may avidly read books on body language and friendship.
An alternative compensation strategy is to prefer the company of males, whose social dynamics are relatively simpler. Boys and men may be more accommodating of someone who is socially clumsy, but who clearly enjoys and is relaxed in their company.
Compensation can also be achieved by developing an interest and talent in science or the arts and becoming an author, artist, musician, singer, or multi-linguist. Social eccentricities are accepted and accommodated due to being valued by peers who recognize and admire a particular talent.
Another compensation strategy is to develop an interest in fictional heroes and superheroes and to have friendships based on shared interests, such as cosplay and Comic-Con, providing defined and recognized roles and camouflage by a costume.
Masking
The person’s intention is to create a neurotypical persona by mimicking others, creating a social mask, and changing their personality (Cook, Ogden, and Winstone 2018; Hull et al. 2017). She plays with personalities. To be successful, this adaptation requires the ability to suppress anxiety, appear relaxed, and to constantly monitor social performance, subsequently reviewing that performance or masquerade when alone. It is also important to appear interested in other people and make appropriate eye contact and empathic gestures and comments. When the person is wearing the mask, it is crucial to ensure others do not perceive their discomfort or that their fluent and successful social abilities are an act.
Some adults have described that when they get dressed for school or work, their clothes become their costumes as they take the social stage. Family members will recognize the development of multiple personas, sometimes even knowing who provided the original persona or script.
Assimilation
The intention of this adaptation is to blend in and to appear normal. This means suppressing aspects of autism, such that autism is invisible. It requires the person to become a chameleon and for a brief while be “cured” of autism. This may improve their opportunities to develop and maintain friendships, relationships, and employment.
Strategies to achieve assimilation can include engaging in part-time schooling and employment to reduce the effects of exhaustion, and having a social network of friends and colleagues who have autism—that is, people who accept and encourage the person’s autism.
Another strategy is to be very brave and determined to socialize, thus eventually acquiring social abilities that were previously elusive. We are increasingly recognizing that in some adults who have autism, there is a delay in achieving social skills, rather than an eternal absence. The social puzzle is finally solved.
It helps for the person to have a social guide and mentor who can provide positive feedback and explain social conventions, as well as the cues that determine what someone is thinking and feeling. The social mentor may be a family member or friend, a psychologist or therapist, or someone who has autism (Cook and Garnett 2018). Eventually, the characteristics of autism can become sub-clinical and do not cause clinically significant impairment in social, occupational, or other important areas of current functioning (American Psychiatric Association 2013).
Consequences of Camouflaging
Camouflaging may successfully hide the characteristics of autism. However, there are consequences. First, clinicians need to modify existing diagnostic instruments and create new ones that are standardized on girls and women with autism; it is important to recognize that those who do camouflage their autism may be (and often are) vulnerable to subsequent psychological disorders.
Diagnostic Instruments
The primary diagnostic instrument for autism is the Autism Diagnostic Observation Schedule, or ADOS. This instrument has recently been criticized in research studies for not being standardized on sufficient numbers of girls and women who have autism, and not being sensitive to the more subtle characteristics in someone who is able to camouflage their autism (Lai et al. 2011; Langmann et al. 2017). Girls and women with autism are often able to mask their social difficulties during the short observation in a diagnostic assessment. The clinician training in the administration of the diagnostic tool and also the scoring system itself both need to be enhanced in order to recognize camouflaging when it occurs. This is particularly relevant in instances where it is anticipated that the person demonstrates typical complex gestures and facial expressions. It is important to be able to distinguish when these gestures and expressions are stylized imitations gleaned from the observation of peers, rather than authentic, age-appropriate nonverbal communication (Rynkiewicz et al. 2016).
We also need screening instruments specifically designed to identify autism in young girls and teenagers to indicate that a formal diagnostic assessment is warranted. We have developed the Questionnaire of Autism Spectrum Conditions, or Q-ASC (Ormond et al. 2018) to differentiate between the girls’ and boys’ profiles of autism. Research using this questionnaire indicates that females with autism, in comparison to their male peers, have different scores in the domains of:
- Gender identity (more of an issue for five- to twelve-year-old children)
- Sensory sensitivity
- Social masking
- Imagination
- Imitation
- Talent in music and languages
The Q-ASC can also be used during a diagnostic assessment to explore with the child’s parents those characteristics of autism that are associated with camouflaging that are not currently included in standardized tests.
The Q-ASC has recently been modified as a screening tool of adult women (Brown et al 2010). A copy of the questionnaire and scoring system is attached as an appendix to this document.
Psychological Effects of Camouflaging
Camouflaging can delay the diagnosis of autism, eliciting comments such as, “You’re too social to have autism.” This will also delay self-understanding and self-acceptance (Bargiela, Steward, and Mandy 2016). A delay in confirming the diagnosis will delay access to appropriate support networks and services for those who have autism.
Research has also confirmed that camouflaging is associated with poorer mental health outcomes and is not associated with wellbeing (Hull et al. 2019). Camouflaging may contribute to high levels of anxiety and the development of clinical depression. When a mood disorder is diagnosed, psychological treatments such as cognitive behavior therapy will need to be modified to accommodate the characteristics of autism (Attwood and Garnett 2016; Gaus 2018; Scarpa, Williams, White and Attwood 2013).
Psychotherapy needs to focus on the negative consequences of camouflaging, encourage self-acceptance, and facilitate ways to explain the characteristics of autism to friends and colleagues so that others can accommodate and appreciate those characteristics.
References
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